2.7.1 The importance of relationships—the social needs of people with disabilities
The [Home and Community Care program] guidelines are based on the income of the person who shares your home with you. I had to get rid of my housemates in order to get extra HACC assistance. I had male housemates and I was told they were expected to help care for me, e.g. food, cleaning, shopping, everything! But none of these people were my partner, they were just housemates, and they were male—how could I expect them to help me shower or go to the toilet? So I was forced into sole living because of the HACC guidelines.
It was clear from the submissions that too many people with disabilities in the community are isolated and lonely. For some, the barriers in the built environment limit their ability to participate fully in community life. But for others the barriers are social and attitudinal. It is these barriers that have proved the most difficult to overcome.
Few can appreciate the impact of exclusion and profound isolation on the identity and self-esteem of people with disabilities. Always defined as ‘different’, always defined by lack—many people spoke movingly of the impact of being defined by others. When identity is always framed by others and always framed in a negative way, it is difficult to develop and maintain a strong positive sense of self and difficult to establish and maintain relationships characterised by equality and mutual support.
The opportunity for marginalised groups to come together around a shared experience of oppression and exclusion has been a key strategy in the fight for social change in other areas. Social movements such as feminism have recognised the importance of identifying and detailing shared experiences in order to advocate for change. As a number of submissions noted, this is no less true for people with disabilities.
The ability for people with a disability to come together around the lived experience of disability is important for both the development of advocacy as well as the development of a strong sense of identity. The importance of peer support extends beyond people with an intellectual disability to those who support and care for them. Peer support plays a critical role in building resilience. Overseas research demonstrates that families consistently value peer support over support provided by professionals. The National Disability Strategy should therefore recognise the valuable role of peer support in building resilient individuals and families.
A number of submissions suggested that people with an intellectual disability particularly struggle for meaningful engagement with the community. Powerful taboos around relationships and intimacy still hamper the ability of people with an intellectual disability to make meaningful connections and enjoy the same rights as others in the community. As a result, they are among the most isolated groups. One submission powerfully illustrated the difficulties.
Over the last several years D has made many friendships with other young adults. Their friendships have developed into boyfriend girlfriend relationships. On many occasions D has asked these young females to go to the movies, go away for a weekend, come on holiday with him or attend music concerts. There has been the occasional time when one of these young females has been able to participate in these experiences. It has been marvellous to see these young adults behaving like other young adults. Holding hands, eating a meal at a restaurant, swimming at the beach.
But in the majority of cases, when D has reached out to the young females, (who always express positive interest in spending leisure time with him), the parents have intervened with rather inadequate explanations. ‘Oh … oh no we are going away that weekend … sorry’ or ‘Xxxxx is too busy on weekends, sorry she doesn’t have the time …’ When I have been with D when he has asked these young females, it is clear they want to engage in more leisure time with him. And yes, it is most likely if they continued with these extended leisure times, then intimacy would most likely occur.
We have tried to make contact with the parents and discuss these leisure options but it’s nearly always a closed shop. I understand contraception could be a concern, but there are many options in this area and it can be managed.
We are not sure how to address the issue. Surely these young adults have the right to engage in human relationships and derive the same benefits we have all received from being able to share in an intimate and loving relationship.
This submission suggested that education of families and the broader community is key to ensuring young people with an intellectual disability have the opportunity to develop meaningful relationships, including the possibility of intimacy.
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2.7.2 The importance of relationships—the experience of families and carers
As a law graduate and a practicing financial analyst I was a productive and contributing member of Australian society. I returned to work after both my pregnancies ... Returning to work after my third child was very difficult, and continuing became impossible. The government did nothing to help. Medical practitioners were reluctant to deliver a diagnosis, which left us in the dark. I have cared for my son full-time for the last decade. The journey since then has been long and hard, and will only end in my son’s death.
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Many people with a disability continue to depend on family carers as their main source of support. There is a lack of facility-based respite available for parents and carers of people with a disability and carers are at risk of suffering physical and mental health problems if adequate supports are not put in place to enable them to effectively care for their relatives. A flexible and affordable range of options needs to be made available to carers as a matter of urgency.
Not all people with a disability have or need a carer. But for those who do, families and unpaid carers provide the majority of the care. For too many people with disabilities, quality of life is dependent on the commitment of families. These families provide somewhere for their family member to live, take them to activities, search for suitable services and programs, advocate for change and stand up for their rights. They make sacrifices to the family budget to ensure their family member with a disability has what they need for a meaningful, participatory, independent life. In short, many families fill the very real gaps in the service and support system.
My daughter has a profound and complex disability. She needs specifically trained carers to help her eat, to go to the toilet and for communication. The services provider has not supplied this adequately—outsourcing rosters to other agencies as they cannot provide a worker, so consequently we do not get the specifically trained ones. This in real terms means my husband and I are obliged to take on these tasks. This means that often we have to cancel plans for a break, or short respite or a special event we had hoped to go to. I am required to pick up the tab every time the service provider falls short.
As the submissions made abundantly clear, families do not resent the care and support they provide—their love and devotion to family members was evident on every page. But they are angry when they feel that care is taken for granted and exploited to reduce costs.
I love my daughter. I want the same things for her as I want for my other children. I want her to have a good education, somewhere for her to live, meaningful work that she enjoys, a circle of family and friends who love her, someone for her to share her life with. But I lie awake at night worrying about how I can make all that happen. She is only eight, and I have already twisted myself into a pretzel trying to make sure she has all she needs. We pay for everything ourselves and we don’t get any government support. I can’t do it all alone.
Most submissions argued that if some of the very pressing needs of people with disabilities were addressed, the responsibility for support would not fall so heavily on families. While submissions recognised that the National Disability Strategy should focus on people with disabilities, many argued that it should also recognise the importance of the support provided by families, friends and carers. These submissions argued that greater support for families is essential to ensuring people with disabilities have every opportunity to reach their full potential and participate meaningfully in the life of the community.
The lack of appropriate and flexible respite was a particular concern. A number of submissions argued that respite is essential to ensuring that the physical and mental health needs of carers are met and that they are able to continue to provide care and support.
Submissions also highlighted the needs of ageing carers still providing extensive support to a family member with a disability. These submissions noted that a lack of services and out-of-home accommodation can restrict the ability of these families to plan for a successful transition out of the family home. Both carers and family members with a disability are haunted by the fear of what will happen when the carer is no longer able to provide an appropriate level of support.
I sometimes feel so guilty because mum and dad have given their lives to support me and without much government funding. Over the years they have faced discrimination and not much support from our local community. I can’t remember when they had a holiday. People just do not understand. Now I see them getting older and I wonder what will happen to them and to me.
Proposed solutions
Proposed solutions focused on the need for improved service delivery to people with disabilities. Most submissions welcomed the introduction of individualised funding packages and argued that greater availability will help to ensure that services and supports are tailored to individual family needs. Submissions also called for improved information and support for families and carers accessing services. Some suggested the creation of a specific service—a ‘one-stop shop’—where people with disabilities and their families, friends and carers could access information about services and programs, staffed by appropriately trained people who could better explore the needs of individuals and their families. Other submissions noted that individuals, families and carers would be better served if bureaucracy and ‘red tape’ was reduced.
Most submissions that discussed the needs of families and carers spoke of the importance of respite. These submissions argued that respite ensures that families are able to continue to support their family member and enables their increased participation in both the workforce and the community. Respite ensures that families are better able to sustain the caring role and balance work and caring responsibilities. These submissions noted, however, that in order to be effective, respite must be flexible and tailored to the needs of individuals and their families.
The physical and mental health needs of carers was also addressed by a number of submissions. They argued that greater attention to the particular needs of carers is warranted, particularly in the area of injury prevention. A number of participants at consultations spoke about the need for routine availability of grief and loss counselling for families with a member with a disability, particularly following a new diagnosis.
Most submissions welcomed the fact that carer allowances and payments had been included in current government inquiries into income support. But many noted that issues for carers go beyond the scope of these inquiries and argued for greater attention to issues such as access to superannuation for full-time carers.